Since Scarletts diagnosis of the rare Platelet Storage Pool Disorder. . . I've definitely felt like I had to defend our disorder. There's often the misconception that I'm over reacting and making a bigger deal out of our bleeding disorder than necessary. Sometimes I feel like people don't understand I'm fighting for her life each day. . . Each and every moment I spend with her I'm trying to prevent her from getting an injury . . . On most days this leaves me feeling emotionally and physically exhausted and I feel like a lot of people will never understand the daily rituals that we've had to take to keep Scarlett safe. They don't understand that all though Platelet Storage Pool Disorder may not be considered terminal . . . IT IS CONSIDERED LIFE THREATENING.
I've had a few people say to me things like "I didn't know her situation was so serious. . . I mean is it considered terminal?" and my response to that, is this . . . all though Scarlett's disorder isn't going to be inevitably the cause of her death, any normal life threatening situation is enhanced ten fold for her. If she got in a car accident, or hit her head while playing ...... she could hemorrhage . . . If we can't get her medicine to her within in a certain time frame of an injury . . . She's at an even higher risk.
A lot of family members don't understand how I went through my childhood with only noticeable bruises covering my body and I survived just fine, yet we are on such high alert with Scarlett. The Dr.'s respond to that, by saying . . . I'm lucky.
Looking back although I didn't have an official diagnosis growing up, my Dr. was well aware of my bruising and did take precautionary steps to keep me safe even though there was no diagnosis. I thankfully was never really a sporty kid that thrived on playing contact sports, so physical restrictions were not really noticeable until junior high and high school where I was forced to take physical education. There are a few instances that stand out to me and now I realize were a direct result of my Platelet Storage Pool Disorder . . .
In Junior High I really enjoyed volleyball, but after playing for only a few days my wrists were covered in bruises and I still can remember how much it hurt to hit the ball. I'm pretty sure that's what started my lack of interest in playing sports, it's like I subconsciously knew I shouldn't be playing them. In high school I tried out for the gymnastics team and after only a few days of playing on the parallel bars my whole abdominal area was severely bruised. . . we immediately went to the Dr. to which he obviously said I couldn't be on the team any more. I also remember being really pissed that I cut my leg while waiting to try out for the powder puff game Jr year (an annual girls football game at our High School). I remember sitting out in the middle of the football field trying to stop this minor cut from bleeding with a single tissue and it just wouldn't stop. So, I ended up not being able to play because I left try outs early because my cut was bleeding through the bandaid they had given me on the field.
Like I said I never really liked playing sports so I was always doing anything I could to get out of playing them and now I'm somewhat thankful for that because I'm sure I would have received some horrible injuries had I played more. My Mom did a wonderful job of keeping my bruising under wraps and thankfully made a lot of correct decisions in my adolescents that ultimately helped me, (like putting me on birth control, which probably kept my bleeding under control while menstruating) and never pushing me to do any sports I didn't feel comfortable doing. The fact that I didn't ever hit my head, get in a bad car accident, or receive any other major injuries before I was officially diagnosed was in someways a miracle.
Children and adults with bleeding disorders are fighting for their lives in ways that non bleeders for the most part don't understand. Our lives are filled with countless events that are consumed by our disorder and we have to be our own advocates. . . I'm fighting for a disorder nobody knows anything about. Every day is filled with the fear of being placed in a life threatening situation and we are always trying to get out of harms way. Please share our story and help Defend Our Disorder and raise awareness of Platelet Storage Pool Disorder.
I've had a few people say to me things like "I didn't know her situation was so serious. . . I mean is it considered terminal?" and my response to that, is this . . . all though Scarlett's disorder isn't going to be inevitably the cause of her death, any normal life threatening situation is enhanced ten fold for her. If she got in a car accident, or hit her head while playing ...... she could hemorrhage . . . If we can't get her medicine to her within in a certain time frame of an injury . . . She's at an even higher risk.A lot of family members don't understand how I went through my childhood with only noticeable bruises covering my body and I survived just fine, yet we are on such high alert with Scarlett. The Dr.'s respond to that, by saying . . . I'm lucky.
Looking back although I didn't have an official diagnosis growing up, my Dr. was well aware of my bruising and did take precautionary steps to keep me safe even though there was no diagnosis. I thankfully was never really a sporty kid that thrived on playing contact sports, so physical restrictions were not really noticeable until junior high and high school where I was forced to take physical education. There are a few instances that stand out to me and now I realize were a direct result of my Platelet Storage Pool Disorder . . .
In Junior High I really enjoyed volleyball, but after playing for only a few days my wrists were covered in bruises and I still can remember how much it hurt to hit the ball. I'm pretty sure that's what started my lack of interest in playing sports, it's like I subconsciously knew I shouldn't be playing them. In high school I tried out for the gymnastics team and after only a few days of playing on the parallel bars my whole abdominal area was severely bruised. . . we immediately went to the Dr. to which he obviously said I couldn't be on the team any more. I also remember being really pissed that I cut my leg while waiting to try out for the powder puff game Jr year (an annual girls football game at our High School). I remember sitting out in the middle of the football field trying to stop this minor cut from bleeding with a single tissue and it just wouldn't stop. So, I ended up not being able to play because I left try outs early because my cut was bleeding through the bandaid they had given me on the field.
Like I said I never really liked playing sports so I was always doing anything I could to get out of playing them and now I'm somewhat thankful for that because I'm sure I would have received some horrible injuries had I played more. My Mom did a wonderful job of keeping my bruising under wraps and thankfully made a lot of correct decisions in my adolescents that ultimately helped me, (like putting me on birth control, which probably kept my bleeding under control while menstruating) and never pushing me to do any sports I didn't feel comfortable doing. The fact that I didn't ever hit my head, get in a bad car accident, or receive any other major injuries before I was officially diagnosed was in someways a miracle.
Children and adults with bleeding disorders are fighting for their lives in ways that non bleeders for the most part don't understand. Our lives are filled with countless events that are consumed by our disorder and we have to be our own advocates. . . I'm fighting for a disorder nobody knows anything about. Every day is filled with the fear of being placed in a life threatening situation and we are always trying to get out of harms way. Please share our story and help Defend Our Disorder and raise awareness of Platelet Storage Pool Disorder.
Written by,
Kari Peepe
©KariPeepe/atouchofscarlett.blogspot.com
For more stories on my journey with defending our disorder and becoming our own advocates please check out:
- The Jackass Whisperer, Dealing with other people's judgements: http://atouchofscarlett.blogspot.com/2014/07/the-jackass-whisperer.html
- Help wanted!Seeking Dr who give a shit: http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html
- I am PSPD: http://atouchofscarlett.blogspot.com/2015/04/i-am-pspd.html
- Interviews, Published pieces, etc: http://atouchofscarlett.blogspot.com/2015/02/my-voice-is-being-heard-interviews.html
- Fear of the Unkown: http://atouchofscarlett.blogspot.com/2014/08/fear-of-unknown-my-1st-blog-for.html
- Proudest Momma on the block: http://atouchofscarlett.blogspot.com/2015/10/proudest-momma-on-blockmy-little.html
Written by,
Kari Peepe
©KariPeepe/atouchofscarlett.blogspot.com
For more stories on my journey with defending our disorder and becoming our own advocates please check out:
- The Jackass Whisperer, Dealing with other people's judgements: http://atouchofscarlett.blogspot.com/2014/07/the-jackass-whisperer.html
- Help wanted!Seeking Dr who give a shit: http://atouchofscarlett.blogspot.com/2014/03/help-wanted-seeking-dr-who-gives-shit.html
- I am PSPD: http://atouchofscarlett.blogspot.com/2015/04/i-am-pspd.html
- Interviews, Published pieces, etc: http://atouchofscarlett.blogspot.com/2015/02/my-voice-is-being-heard-interviews.html
- Fear of the Unkown: http://atouchofscarlett.blogspot.com/2014/08/fear-of-unknown-my-1st-blog-for.html
- Proudest Momma on the block: http://atouchofscarlett.blogspot.com/2015/10/proudest-momma-on-blockmy-little.html
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